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FARAFARA Cure FA

Jason and Alex Dagley

Name: Jason Dagley

Age: 29

Where do you call home? Frisco, Texas

Education: Some college

How long have you been living (or known you are living) with Friedreich's Ataxia? I have known I have FA since I was 10. My symptoms started around the age of 4-5. I was having difficulty in gym class doing aerobics. My coordination was off. The teacher suggested that I see my doctor. The doctor did some assessments in her office. She suggested that I have further tests done at Scottish Rite Hospital. After a thorough neurological test they really didn't know. In my medical record, it states that it couldn't be FA because my parents are only related by marriage. In the middle of all this we moved to Baton Rouge, Louisiana. We were hooked up with a neurologist at children's hospital in New Orleans. She conducted more tests, nerve and muscle biopsy, EMG, nerve conductions, an MRI and a spinal tap. They even tested my parents with some these. Nothing was conclusive.

My nerve and muscle biopsy showed some demyelination conducive with Chronic Inflammatory Demylinating Polyneuropathy(CIDP). I was put on intravenous immunoglobulin every 6 weeks. It was a 3 day procedure that lasted 8-10 hours each day. After 18 months of this my little brother, Alex, started showing coordination problems. My parents had seen the doctors do the neurological tests so many times, they did them to Alex. He didn't pass. They called my neurologist and she stopped my IVIGs immediately. She had told my parents that if either one of my brothers started showing signs then the CIDP diagnosis was wrong. This was all before the gene was discovered in 1996. We were sent to the head of neurology at LSU Medical School. After some of the same tests, this doctor told my parents that my brother and I had FA. Needless to say, my parents were devastated. The diagnosis was confirmed by our geneticist after the gene was discovered.

Describe your transition from walking to walker/wheelchair. Seems like memories of walking are dreams. My transition to a walker is hazy, I didn't think anything was different because I was ten. I very much remember my first wheelchair because it was also my first day of high school.

What do you like to do to stay active and what type of exercises do you do to stay strong? I don't do as much as I used to, but I try to keep my brain sharp.

Do you use any tech aides? if so, what works or hasn't worked for you? I tried drangon speak, but my voice is very inconsistent. Doesn't work for me. I do use the long press feature on my tablet.

What's your most comfortable pair of shoes to wear? Wide width shoes are my friend, Vans are so comfy.

Do you have a diet plan you like to follow, and why? I do not have a diet plan, I eat what I want.

What is one way living with Friedreich's Ataxia has POSITIVELY affected your life? FA has kinda forced me to learn about the medical field and other things that I would have never learned.

What is the best advice you could give to a person who has been newly diagnosed with Friedreich's Ataxia? Learn all you can about FA because understanding what is and will happen makes life easier. Actively listen in doctors appointments.

What is the first thing you want to do when a cure/treatment for Friedreich's Ataxia is found? I'll say, "It's about time!"

"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? To me, it means that FA may define you to others, but you are still you. It doesn't change your soul. Whining doesn't change anything.


Name: Alex Dagley

 

Age: 27

Where do you call home? Baton Rouge, Louisiana but I live in Frisco, Texas now.

Relationship status? Single...upsettingly.

Occupation/Employment: I am a Freelance Photographer...I take online classes...I am at home a lot.

Education: I'm currently in college.

How long have you been living (or known you are living) with Friedreich's Ataxia? I was diagnosed when I was seven.

Describe your transition from walking to walker/wheelchair. I don't remember using a walker very much. I had scoliosis surgery in 2001. After that my legs just didn't work as well so I started using a chair.

What do you like to do to stay active and what type of exercises do you do to stay strong? Lift weights, regular exercise and bike riding when I can. I am very active in my church.

Do you use any tech aides? if so, what works or hasn't worked for you? I use a computer and cell phone. Dragon speak doesn't work well for because of my dysphasia.

What's your most comfortable pair of shoes to wear? Tennis shoes.

Do you have a diet plan you like to follow, and why? I just try to eat as healthy as possible.

Alex and his niece. Alex and his niece.Do you participate in any adaptive sports or recreational activities? Bike riding.(Alex has participated in Ride Ataxia Dallas.)

What is one way living with Friedreich's Ataxia has POSITIVELY affected your life? FA has taken a lot from me but because of FA I have gained so much more. Without FA I would not be who I am today.

What is the best advice you could give to a person who has been newly diagnosed with Friedreich's Ataxia? Know that it will get worse. Don't give up though.

What is the first thing you want to do when a cure/treatment for Friedreich's Ataxia is found? I want to go somewhere that is not accessible. :)

"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? I am not defined by FA. This disease means nothing in the grand scheme. It may slow me down. It's not going to stop me.


We are stronger together! Find a new "Meet the Community" interview every Monday. Andrea

 


About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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